Well I awoke feeling fairly tired after a tired and restless night on the Ward at UCLH. What with all the beeping of IV Pumps, staff moving around and argumentative patients and on top of that my own restless mind, it was never going to be a good night. I also had Dexamethasone late in the evening which would keep me awake.
I was also supposed to stay on my back all the time and that was starting to cause me some backache or perhaps I should say, add to my back pain.
Still it was morning and I was wondering what the day would bring.
Before long the tea trolley arrived and I took a welcome cup of tea.
As I was immobilised I had to use a bottle to wee which wasn’t easy but I coped!
Tea was soon followed by breakfast and I opted for toast and marmalade with more tea.
I was feeling rough and really wanted to have a wash and clean my teeth, how was this going to work?
I was soon hooked up to the drip again and infused with some Dexamethasone, I asked about a wash and was told I would be having a bed bath, can’t wait!!!
Come around 9am Barbara turned up and I was very pleased to see her and she brought Tea and Cake with her, along with a change of clothes and other supplies from home.
Then it was time for my bed bath and time to wave bye bye to the last of my dignity, to be fair the people who did the bed bath were very good and thorough although by the end of it my hair looked like Dr Emmet Brown from the Back To The Future Films!
I was then seen by one of the Oncology Registrars, Dr Yin whom I had seen in clinic before, so he was familiar with my case. He asked how I was and check me over, he said Dr Linch would be around later in the afternoon and that I was going to be scheduled for radiotherapy but he didn’t know when that would be.
He also said that the MRI scan looked good and while I had a lesion inside my spine it was not putting pressure on the spinal cord and the purpose of the radiotherapy would be to reduce that lesion even more so that it would not grow. The radiotherapy and dexamethasone should both work towards keeping it small.
It was turning into a busy morning.
I was then visited by a doctor from the radiotherapy team who talk me through the radiotherapy process and got me to sign a consent form. My takeaway from this meeting was that they were going to start radiotherapy today and for five days and so I assumed I would be staying in for 5 days and started making plans to do that.
Someone would be sent up to take me down to the radiotherapy department later in the day.
Lunch arrived, tuna salad which looked quite nice and wouldn’t get cold as I couldn’t eat it then as I was once more hooked up to the drip for my second Dexamethasone infusion.
Some good news came in that I was no longer under spinal cord compression protocol and no longer needed to be kept immobilised which was great news, it meant I could sit and and walk about, first stop the loo!
Initially I was a bit wobbly, but I think it was just because I had been immobilised for so long, I used my stick to help me get around and it was good to stretch my legs. I would also be able to sit up and eat my lunch and not wear some of it like I did last night!
Lunch done I was soon picked up by a porter who took me down to radiotherapy for the planning scan.
I had been through this before so I knew the procedure, they would be doing a CT Scan and marking me up for the treatment, I gained another tattoo just a small dot on my chest, but it is now my third.
It was at the end of the planning session that I learnt that I would not be having treatment until the 16th, contrary to what I thought I had been told earlier, what was going on?
Back on the 10th floor I just sat down when a physiotherapist turned up to assess me, She gave me a quick examination and asked lots of questions. We then went for a little walk so she could assess me, and she offered me advice on using the walking stick, she also said she could provide me with another stick which might help.
On the way back I was ambushed by Dr Linch and his team, there was about six of them, we had a chat about how I was, and he said I could be discharged and go home.
Wow, I was thinking I would be in for a few days but was pleased to be going home.
He said that while I clinically had cord compression, I fell outside the parameters for the cord compression protocol which was good, and the aim was to keep me there.
I would have the radiotherapy next week and then see him again the following week for a catch up and a review.
I was now time to plan a quick escape and get home although the hospital had other ideas!!
We quickly gathered my bits together and I got changed, we were told we would go down to the discharge lounge where they would sort out my prescription etc.
This took ages and ages as we waited for the prescription to be fulfilled, we were told it was because I would be getting a controlled drug, morphine. But still why does it take so long!
Finally just after 6pm we set off home in a taxi, I couldn’t face the tube!
We got home and I felt I would now be able to relax, it had been a long couple of days.
I must stay that all the staff at the hospital were great, kind and caring, there was confusion between departments and at time I felt I was kept in the dark but I guess it was an evolving situation.